Non-diagnosis

capers123 said:

I had the second half of my NHS diagnosis in January.

It didn't go the way I was expecting. I was told that I don't have an ASD. I'm still rather annoyed with that non-diagnosis, and disagree with a lot of what I was told.

I can well understand that you're rather annoyed with the non-diagnosis session.  

capers123 said:

Admittedly, the outcome looked likely at the start of the first session, whe the person conducting the interview said that their criteria for diagnosis was very high - they were looking to prove a disablility.

The NHS is only really now (since 2017) diagnosing ASD in terms of Low Functioning social criteria ~ due to the lack of funding and all that. Getting an NHS diagnosis for being on the spectrum is increasingly excluding people with Higher Functional presentations of Autism regarding Social Communication, Interaction and Imagination.

Check perhaps or if your not up for it perhaps not the following link from the Independent as reported on 30/05/17:

https://www.independent.co.uk/news/health/nhs-autism-diagnosis-south-west-london-st-georges-mental-health-trust-concerning-national-autistic-a7762866.html

capers123 said:

When I said that I thought of myself as having abilities rather than disabilities, she nodded.  There are a lot of things that I have problems with - social interaction, taking things literally and the like, but I don't class them as disabilities - they're just 'me'.

Well technically speaking, when someone loses or has lost the ability to do something they once could, such as going deaf for instance and not being able to hear, they are as such disabled. ASD does not always then involve being disabled, as it is a social interaction 'Disorder', although complications from which do prove 'Disabling' ~ in terms of psychological depression, anxiety and breakdowns, and physiological stress reactions involving digestion, skin and exhaustion problems etc.

As far as having problems with social interactions, taking things literally and the like goes, and stating that these are not disabilities, you are correct, but the actual concern is disorders involving social interactions, not taking things literally and so fourth. So your understanding and comprehension of how others relate and interpret things, is not a developed component of your thinking ~ so basically your Theory of (the social) Mind is more personally exclusive than it is socially inclusive. This may be indicative of something maybe ;-)

capers123 said:

The reasons I was given as proof that I didn't have an ASD:
1) I am in a long term relationship.  Yes, I am married. My wife also exhibits many Aspie traits. We have no close friends, only acquaintences. Actually starting the relationship was quite awkward.

One problem involved with having Autism is that as such long term relationships are for some difficult, and for others impossible. I suppose that being single or having a trail of unsuccessful relationships is in part a requisite for being diagnosed with ASD on the NHS now, for the time being.

capers123 said:

2) I have held down a job for 25 years.  I swapped jobs every 6 or 9 months for my first 10 years of employment - I just couldn't hold one down, often being 'encouraged to resign' as it was easier than firing me.  It wasn't just swapping employer, but changing from Bank Clerk to Music Teacher to Signalman to Fruit Machine company security analyst to Compter Programmer.  I was lucky to find this job 25 years ago, as I have a very tollerant boss who seems to realise I don't like interacting much and have allowed me to sit in a corner getting on with my work without interrupting me too much.  Noise cancelling headphones have helped recently, as has telecommuting..

Having long term employment for 25 years is no evidence in itself of not being Autistic, and the nature of your employment history prior to your long term employment is also not unusual for someone with HF Autism. Therein of course lies the problem with getting diagnosed via the NHS, as you do not seem to have LF Autism but much more HF Autism. 

capers123 said:

3) I pointed at things I was describing in a picture book during the session with the OT. Yes, my finger pointed to things whilst looking at the book. I do this if it's just me, but apparently this showed I was pointing it out to the OT thus displaying theory of mind.

So you were using your finger as a focus of your attention rather than as such for the Occupational Therapist's. Oops on the OT's part methinks. When I was diagnosed, the specialist clocked and tested everything I said and did, but stated I used good eye contact in the diagnostic report ~ even though I only looked at the specialist's left eye for a fraction of a second, before the specialist hurriedly looked away like just about everybody has. I learnt as a child to use my peripheral vision rather than my central focus as most people have not liked it when I have.

capers123 said:

4) I was quite happy chatting during the diagnosis, thus proving I have no problems with interaction.  I know that had the topic of conversation been something other than one of my favourite subjects (in this case, about me), the conversation would have been far more stilted and interrupted.

From the NAS fact pact on Asperger's Syndrome, "A GP's guide to adults with Asperger syndrome ~ Questions to consider when talking with adult patients who may have Asperger syndrome" ~ with the most relevant here being:

"Does he or she:

> find many social and interactions, especially in groups, confusing (even though he or she may seem OK one-to-one with a doctor)?"

> have any hobbies or interests which take up a lot of their time (or had these when they were younger)?

So either seemingly being happy chatting about yourself during the interview was not correctly assessed in relation to ASD or Asperger's Syndrome, or the NHS diagnostic assessment criteria no longer includes HF traits.

capers123 said:

There was no consideration of the 30 pages of ASD traits that I'd submitted in advance. My very high score in the AQ50 and very low score in EQ60 were put down to 'having learnt how to answer it'.   I was answering the tests truthfully, as often as possible without considering the answers, and not trying to skew the results of the tests.   What would the point be in not answering them with the answers I feel.

Having a high score on the AQ and low on EQ tests being put down to 'having learnt how to answer it' . . . ~ I got the 'your just a wannabe' session myself actually, on two separate occasions by two separate psychologists. Instead of letting it get me down though I used the frustration of which for getting organised and getting diagnosed.

capers123 said:

Those around me are sure that I am an Aspie, as am I.  Even the other people I know who do have formal diagnosis think that I have a high-functioning ASD/ASC. 

If I can raise the money, then I may go for a second diagnosis, ideally with someone using a different diagnostic criteria; I don't think it fair to ask my GP to refer me to another NHS clinic.

But at the moment, I feel myself to be in a limbo. Grrr.

Any suggestions would be welcome.

I so know what you mean about the limbo. I have had loads of experiences getting ignored about my problems, so many many many many times. My suggestion is be as stoic about it as possible, and recycle the 'Grrr' for getting really focused.

I would start by writing a letter to your GP (much as you have above) disagreeing with the assessment, stating (if you do) that you wish to get a second opinion, and even discuss this with your GP too perhaps. And maybe do away with the 'if' business on raising the money for a private diagnosis, and go for it as an Aspergian with all the Aspie power you need. 

Consider perhaps:

The private route often involves the person referring themselves to the diagnostic service.  The cost of an assessment range from approximately £200 to over £1,000. The National Autistic Society has details of professionals all over the UK who have autism expertise.

Copied and pasted from:

https://www.different-together.co.uk/diagnosis

If any of that helps any?

Deepthought said:

I learnt as a child to use my peripheral vision rather than my central focus as most people have not liked it when I have.

This is very interesting because usually NTs think that we avoid eye contact because it make us feel uncomfortable. You are saying that you avoid eye contact because you think it makes others feel uncomfortable. I also avoid eye contact and I think it was once more for the second reason than the first, though it has become such a habit that I can't honestly define with certainty what the original reason was for it. I think making eye contact now causes me discomfort just because it is against my usual habit and for no other reason.

The fact that we would avoid doing something because we perceive that it might make others uncomfortable (whether or not we are correct) suggests that we have better theory of mind, on average, than we are expected to according to the diagnostic criteria. I think that theory of mind thing is more for children than adults, anyway, because, whether or not we started out with good theory of mind, most of us developed it before we reached adulthood.

Is it not true that any small child will think that they cannot be seen when they themselves cover their eyes? Isn't that why they find peek-a-boo so fun? That suggests that theory of mind is learned, not innate. I have tried to remember a time in my early life when I didn't have good theory of mind. For me it's just a logic thing. Someone will know or not know something depending on their own experience. I don't remember thinking that everyone knew exactly the same things as I did. I do remember believing for the first years of my life that adults knew everything and were always right, probably because that's what I was told, but is that a trait of being on the spectrum, or just of being a child?

Deepthought said:

I learnt as a child to use my peripheral vision rather than my central focus as most people have not liked it when I have.

This is very interesting because usually NTs think that we avoid eye contact because it make us feel uncomfortable. You are saying that you avoid eye contact because you think it makes others feel uncomfortable. I also avoid eye contact and I think it was once more for the second reason than the first, though it has become such a habit that I can't honestly define with certainty what the original reason was for it. I think making eye contact now causes me discomfort just because it is against my usual habit and for no other reason.

The fact that we would avoid doing something because we perceive that it might make others uncomfortable (whether or not we are correct) suggests that we have better theory of mind, on average, than we are expected to according to the diagnostic criteria. I think that theory of mind thing is more for children than adults, anyway, because, whether or not we started out with good theory of mind, most of us developed it before we reached adulthood.

Is it not true that any small child will think that they cannot be seen when they themselves cover their eyes? Isn't that why they find peek-a-boo so fun? That suggests that theory of mind is learned, not innate. I have tried to remember a time in my early life when I didn't have good theory of mind. For me it's just a logic thing. Someone will know or not know something depending on their own experience. I don't remember thinking that everyone knew exactly the same things as I did. I do remember believing for the first years of my life that adults knew everything and were always right, probably because that's what I was told, but is that a trait of being on the spectrum, or just of being a child?